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Paralysed from having spinal cord compression tumour

Avy-Rae10
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Hi long short story 

I was diagnosed 2019 stage 3 bowel cancer had radiotherapy n surgery followed by more chemo I was given the NED may 2020 fast toward they found something on my rib very top one ! It was BACK !  Had to have surgery which I lost use of my right arm but it was a small price to pay to have a life also !!! The full tumour couldn’t be removed because it was touching my spine t1 spinal. I went on to have palliative radiotherapy to that area & also immunotherapy I was doing amazing but then I finished my course and things started to go wrong again.

They thought I had colitis so I was on high does steroids and scans, and was admitted into hospital and enough for a few weeks then I had an MRI which sadly showed spinal compression at T1 in t12 and my walking had got bad. I was shaking, couldn’t lift my leg and was losing my balance a lot but didn’t understand why until I got my results from my scan which showed the reason why two twos compressing my spinal cord this is the bit where things went terribly wrong when you are spinal compression you’re supposed to be seen for emergency treatment, radiotherapy within 24 hours, I was nine days as I got to where I should’ve been for the palliative radiotherapy my walking in marvellous gone when I had my first round of radiotherapy, I lost the use of my legs from that day of paralysed.. fast forward to where I am now so I’m paralysed from the chest down having had the best news because apparently they’ve never give anyone Chemo that’s being paralysed. I don’t know what wish this is or if it’s true what I was asking.

Is there anyone on here that’s paralysed that I said any different type of Treatment or Chemo and being okay because my cancer is still causing problems in my spinal cord and I an active treatment.

I just feel like my hospital just don’t want to do anything with me anymore

Parents

  • Hello avy-rae

    I cannot begin to imagine how you are coping with metastatic cancer in your spine now at this stage and having paralysis. Sometimes the doctors decide that further treatment will not improve your quality of life and may even make it worse. Moderator Steph has suggested getting a second opinion, you are entitled to have one, you just need to ask. Maybe a fresh look at your history by another doctor could lead to you receiving further treatment. I too have metastatic cancer in my spine at Vertebrae T7 amongst other areas. I am aware of the progression of spinal cancer and currently have a constant dull backache, pins and needles and numbness in my arms and hands and constantly dropping things. I am beginning to occasionally have a bit of difficulty walking and lifting my leg to climb stairs. However like you I carry on doing what I can (for me quite a lot in these early stages). To be honest for the first time I am s*** scared of what the future will bring. I am humbled with your matter of fact attitude and acceptance of where you are now on your cancer journey. I hope that you will continue to receive the care that you deserve.

    Ed

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  • Hello avy-rae

    I cannot begin to imagine how you are coping with metastatic cancer in your spine now at this stage and having paralysis. Sometimes the doctors decide that further treatment will not improve your quality of life and may even make it worse. Moderator Steph has suggested getting a second opinion, you are entitled to have one, you just need to ask. Maybe a fresh look at your history by another doctor could lead to you receiving further treatment. I too have metastatic cancer in my spine at Vertebrae T7 amongst other areas. I am aware of the progression of spinal cancer and currently have a constant dull backache, pins and needles and numbness in my arms and hands and constantly dropping things. I am beginning to occasionally have a bit of difficulty walking and lifting my leg to climb stairs. However like you I carry on doing what I can (for me quite a lot in these early stages). To be honest for the first time I am s*** scared of what the future will bring. I am humbled with your matter of fact attitude and acceptance of where you are now on your cancer journey. I hope that you will continue to receive the care that you deserve.

    Ed

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